My journey has not ended, but in truth has just begun.
Those of you that know me personally know that I’ve gone back to school for Environmental Technology. Being a mature student that got there on their Secondary School Diploma like a regular fresh out of high school student has its own challenges. However, there has been one I was not ready for: my body to try to give up.
I ended up having to go through the Access and Support Center also known as the Accessibility Office for numerous factors with regards to my general issues that have compounded since I last graduated. However, the one that I never thought would be that big of a problem is.
When I was going through school the first time, my hands would ache on occasion while I would be typing. Since I went through for Computer Programming and was typing day in and day out I thought this normal. It probably wasn’t. When I was doing my Initiate work I could only type for so long per day to do my course work or else my hands would ache and I wouldn’t be able to do much. Once again, I thought it was normal with the amount of typing I was doing…
Fast forward to now, the hypermobility has gotten to a concerning level in my hands and I am losing a lot of fine motor control in them. I can still cook etc even on bad days (well when the bindings don’t interfere) though showering is a bit of a pig (long hair + sore hands = NOT FUN!!!) however, that wasn’t one of the main issues as I don’t really mind when my hair is a tad greasy… The main issue: I can’t use traditional pen and paper or turn pages in books.
When it comes to class this does not affect my studies as much as you might think. The ASC office has a lovely technologist who has looked into getting those of us who need it our books in pdf format and the like for text to voice and scrolling purposes. However, this does interfere with another aspect of my life: my religious studies.
Many of the books that have high levels of scholarship are typically only found in print. Some of these it’s because the work was penned prior to ebook formats such as kindle and epub. Others it’s because it wasn’t in the author’s pervue to do preferring the old ways of doing research with regards to looking things up in books and the “if it works for me why can’t it work for them.”
Now without exposure to many people who may have physical or learning difficulties that is a common thought process and therefore I cannot really blame them. However, looking at much of the knowledge it is time that it is made more accessible.
There are people in our communities who may be amputees and do not have their hands. There may be those who are blind. There may be those that have visual processing errors and therefore cannot learn to read but can carry on a perfectly intelligent conversation verbally. There are also those who may lose their ability to do these things over time due to one or a host of medical issues.
As our pagan population ages, and as more and more people in the world end up with the genetic oddities that cause these conditions we need to look at what we expect of our authors and those that possess the knowledge. We have to speak up when we can about having formats that can be useful to as many people as possible. We need to look at all our options and say “could this be of help to someone?” vs the mindset of “everyone should be able to do it this way”.
Many of the authors that I know have been awesome as I’ve been poking them about making sure I have access to the scholarship I need and want access to. For that I am truly thankful. However, not everyone has the energy levels or as many of us say “spoons” to fight all the time. I am just stubborn enough to persevere through just about anything (ignore my days that I’m crying because my hands won’t make ravioli though please, and hell I keep trying even when crying!) but not everyone is. It is a very tiring fight to continually do. I was born into it with anaphylaxis in the 90’s. I know the things I need to do to get what I need, and really I am thankful for my mother for that. She taught me how to do this, how to explain to people what is going on and get them to compromise with me to fix it. Not everyone has these skills going into their disabilities.
These resources need to be thought of from the beginning. Publishers need to think of these things when talking to our authors. Our authors need to think of these things when dealing with the public and their publishers. How can you reach as many people as possible? Make sure all the avenues are covered.
As organizations we should be ensuring our websites are easy for reading technology (apparently wonky tables that have had cell merges are NOT the easiest things!). That they don’t require a bunch of clicking for sub-pages of sub-pages. Our leaders should be trained on the phrases to not say to people with disabilities from the start such as “it will get better” because sometimes, it won’t. Sometimes they just need the sympathetic ear to hear what they are facing with a “is there anything I can do?” not all do this though.
As ritualists we also have to think of these things.
What about the person who can’t do the spiral dance in ritual? what about the person who cannot understand the ritual because it’s dark and they primarily read lips but you’d typically never know they’re deaf? What about the person who is blind and can’t see the altar to know where to put things properly? When we know about these things in advance because it is one of our regular participants or grovemates that have these issues they can be easily adjusted for. However, what about an unexpected guest?
In the past, I’ve always run rituals out of my hand written book. I no longer can. I cannot turn the pages effectively mid ritual. I cannot turn the pages even mid part in a timely enough fashion to continue on. I switched to the thing I know works at school: my tablet. It is sometimes odd having tech in ritual for me, but I do what I do. I know the gods and spirits would rather me not want to die at the end of the ritual and still be able to eat feast than to use the older and less effective tool. However, I know there will come a day when some unknowing person is going to say something about my tablet. This is the case for many with some sort of disability, especially those that are a tad more invisible. (For those reading who haven’t seen me in the last couple years, I no longer need my cane 😉 )
There are many versions of tech that we all use from tablets, to reading software, to voice to text. Those without disabilites sometimes it is because they are as they will say “being lazy” however for others those are required daily pieces of living.